Pathways Through the Maze

Dr. Gerard S. Letterie

Prepare yourself for a positive journey filled with joy, stress, conflict and challenge. It will involve mind, body and heart. This journey has the potential to enrich your life and fill your relationships with a unique depth of understanding. But also be prepared to focus your energies on a time consuming effort and one that will challenge your personal status quo. In fertility evaluations are intense, challenging and time-consuming.  But what in life isn’t when the rewards are so immense?? And the rewards are what we call a family. The journey to this goal can take several forms and travel several pathways. As with most journeys, information eases transitions and enables us to make progress easily and predictably. And that’s what this book is all about.

We will use three words during this journey: empowerment, success and family. These words will be the mantras that we repeat as we move forward. We will refine and re-define what these terms mean to us in the context of infertility and infertility therapies. Take notes during the journey. It’s one worth recalling, repeating and relating. It’s a story worth sharing with your partner and trusted friends.

Infertility poses an emotional and intellectual disconnection for many of our patients. Infertility is the first time in their life that a goal (having a family) has been set and difficulty is experienced (infertility) in achieving the goal. Their life’s philosophy has been goal-setting, working hard to attain the goal and, more often than not, succeed. Fallback plans become an integral part of survival within this paradigm When things don’t turn out well or as expected, options are usually available or an end-run possible to still succeed. That’s the intellectual part of the process. Nothing can be further from reality for infertility therapies. Goals may be set. Hours of work given to the project and the goal may not be achieved. The tried and true techniques for success simply don’t work. Frustration mounts and the walls start to close in. That’s the emotional side.  In addition to this, circumstances are even more complicated and frustrating due to a limited opportunity for success: one time per month, twelve times per year for anyone trying to conceive. This means an incredibly long interval between tries and, usually, considerable stress in the ramp up to that opportunity, i.e., ovulation, and in the two weeks following, awaiting the outcome. For many patients this is also the first time that they’ve had to seek medical care and relinquish control to a care provider. This aspect alone is a challenge for most of us. Setting goals at the start for many of our patients is extremely important as a means to control the crescendo of emotions.

One piece of advice I consistently give to patients early in the evaluation is to focus on their life in its totality and wholeness. Each of our lives are made up of career, family and friends, hobbies and skill sets that are meaningful to us. These aspects of our lives should never be lost. Another aspect of infertility therapies that are unique is financial. For many of our patients, the cost of infertility is paid out of pocket. Insurance coverage for most treatments is mandated in only eight states. In all others, it’s a variable collection of policies governing payment. What emerges is an intensity and expense on both emotional and financial levels.  An integral aspect of proceeding forward with these therapies is to make certain that emotions are in balance. A definition of wellness and an outline of a plan are essential for each of us at the start.

By the term wellness, I mean physical, mental and emotional well being and by the term plan, I mean a method that we have thought through in advance to maintain well-being in our lives and maximize the effectiveness of treatment. Infertility therapies have many rapid fire twists and turns with little time to re-group.  It is important to have addressed these issues and drafted a plan that is personal, meaningful and workable. We can start by making a menu of issues that are important to us in the short and long-term. It might look something like this in general terms:

• Mind-body relationship
• Balance medical and social issues
• Incorporate fertility care into life
• Careful attention to personal priorities
• Fertility care should be part of your life, not your ENTIRE life

We like to counsel our patients that part of their care should include a wellness plan similar to the tenets of eastern medicine.. This wellness plan takes into account all aspects of life and tries to strike a balance between the emotional, spiritual, physical and mental aspects of day to day living. A balance is needed if we are to live full and productive lives and toggle between work, play and family life. I like to counsel patients that the same applies to them during their infertility evaluation. One of the things we talk about early in the process is how to generate this infertility wellness plan. By this I mean taking inventory of things important in your life other than the immediate issue of trying to get pregnant. We can view our lives almost as a wheel in a carnival spinning and rotating among various aspects of living. As we conclude on issue, the wheel turns and stops on another that then requires our attention. And so it goes day after day, task after task, each unique and offering another dimension to our lives. We should provide equal attention to ourselves, our partners, friends, family and careers but retain the ability to focus intensely when needed. There are times when various aspects of these must give way to the infertility evaluation. Infertility care is a very dynamic process and at times requires more time investment and focus than at others. However, we should never lose sight that this is one aspect of your life (supremely important during the evaluation and at times assuming a bigger than life perspective) with multiple outcomes and multiple options. In addition, like other challenging aspects in life, it is an opportunity to learn, not only about ourselves, but our partners.

Evaluation and Treatment: an Evolution of Feelings

Let’s focus on the evaluation and treatment plan. Two issues are important. First, each infertility evaluation is unique to an individual or a couple. By that I mean infertility treatments are by no means cookie cutter. You bring a specific set of physical and emotional needs to the encounter with a provider. The end plan must account for this uniqueness and tailor the plan accordingly. This process is not conducted from the top down. Gone are the days when a person wearing a white coat dictates what you should or shouldn’t do. This process is ideally conducted on a level playing field with guidelines and recommendations made by a provider with your best interests at heart. As providers, we can suggest a number of tests that may be appropriate at the start or at various points in the evaluation. However, the decision to ultimately undertake these is strictly a decision reached between a couple or an individual and the care provider. Second, the goals of an infertility evaluation may change as the evaluation unfolds. While the target remains fixed, i.e., establishing a family, new pathways may be required to achieve the goal.

Here are two real-life examples from our practice that we can discuss.  A very prominent executive of a software company sought care with us. Though her husband was open to all options, she was quite explicit at the start of the evaluation that egg donation was never an option. As she put t (and as so many of our patients express it), she wanted her own child. She was 42 years old with normal testing. Overall, her age was of concern but with a normal evaluation, she had several infertility treatment options. Over multiple sessions we discussed these treatments and proceeded with a cycle of in vitro fertilization (IVF) that did not fare well. We retrieved four eggs and transferred two embryos of extremely poor quality, counseling the patient that the likelihood of conception was low. That was fine by her, as this was the only option she was willing to exercise at the time. Pregnancy did not occur and the patient decided not to pursue any further evaluation or testing. Though ambivalent emotionally about stopping treatments, she dropped out of therapy and moved on with other aspects of her career and family.

Over a year passed and she returned for further discussion regarding her options. During this return visit, she was prepared to discuss egg donation. “OK. I’m ready to listen but uncertain that I’ll act on this idea.” Great. That’s exactly where I think she needed to be. Given her intellect and high need-to-know all, it was best for her to actively gather and weigh all information. If egg donation still did not resonate with her after this discussion, I was confident she could leave the idea safely behind. Better this than leaving the idea without scrutiny. Her husband continued to be supportive with either decision.

More time passed and she returned ready to go. She underwent a cycle of oocyte donation, conceived and delivered a lovely girl. After delivery, she returned so the entire staff could fawn over her daughter. I asked her at that time what advice she would give to patients in similar circumstances to hers. And by her circumstances, I mean an extremely competent, accomplished professional woman, age 42, who postponed pregnancy in lieu of career. Her response was quick and very heartfelt. Her counsel to patients would be to do anything it required to be a mother. She elaborated: She said that patients should be aware that feelings and sentiments towards various therapies may change. Keep open to new information and gently re-visit where you are. We’ve seen this evolution frequently in our patients. What might be an option early in the evaluation becomes a tiresome and grueling experience. Patients withdraw from therapy in the heat of the moment to preserve sanity and emotional reserve. Other times these decisions are made with a clear mind, after counseling and considerable thought. Evolution happens in the course of this experience.

In the second case, a 35 year old patient presented with one year of infertility prepared to do IVF as their first option. They were well educated about all their choices encouraged by their had a normal  evaluation. As we progressed through counseling and a ramp up to the IVF cycle, they called with an urgent need to re-visit all options. “The complexities of the IVF experience are beyond what we anticipated in spite of our discussions and knowing several friends who went through the process. We think we need a break for sanity sake”. I supported this decision fully: they had arrived at a place in which they needed to withdraw or risk burnout or failure. Their age permitted them some breathing room and I encouraged them to step back and focus on the other facets of their lives together. They eventually adopted and are very happy. They are considering whether to pick up the infertility treatment plan at some future date. This couple presents the other side of the therapeutic coin.

We’ve had patients come in very eager to proceed with the most aggressive therapy and after trying one or two cycles of conservative treatments, decide to withdraw from therapy completely. In many circumstances, they merely return to say, “…you know, this was a great experience, I feel very satisfied that I’ve given this my best but it’s clearly not something that I’m going to do forever…” Sometimes the couple will decide to be childless, proceed to adoption or postpone therapy for a period of time. In other circumstances, we’ll have patients present to us clearly not interested in aggressive therapies. They’ll come in for diagnostics only. If the evaluation is normal, patients will sometimes, after a further interval, return to us and say, “…okay, I really wasn’t ready for more aggressive therapies but I think I am now…” Concepts and feelings regarding these therapies can change in either direction. We should be open to that possibility. Here’s the take-home message: consider all options, set boundaries but be willing to re-consider options as care progresses. Be gentle with yourself; don’t make the process torture.

Life can only be understood backwards, said Kierkegaard, but unfortunately it must be lived forward. There are times in life when we’re never quite certain what we’re getting into, and it’s only after we’ve been into it a while that we really understand where we have been, what we’re doing and where we should go. Viewed in a very positive sense, infertility evaluations provide us with the opportunity to reassess the balance in our lives. For most of us, there’s nothing more important in life than family, followed closely by friends and careers I suspect. In nature, balance is an objective always to be kept in mind. Nothing different should exist in infertility evaluations in which a balanced approach to infertility care is extremely important.